Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@drg24242

Hi Rachel and everyone. My CRPS is continuing to progress. It started on left upper body and in last week continued now to right upper body and in last 48 hours into my left toe.
I saw on this sight a treatment called Ketamine Pain Treatments. I've followed up and found that the head doctor at UPMC Pittsburgh, Pa. pain manag ,Where I live, does these and called his office this morning. His nurse told me that he was booked until late January. I explained my situation. I recieved a call back an hour later that they had a cancellation. on 1/9/23. I jumped at it. I understand that the Ketamine treatment is not covered buy any insurance.
Any idea how much each treatment will cost me? Depending on haw much I may have to do a reverse mortgage on my home.Pleae respond from anyone as how much this will cost me. Please advise. Thank's Darryl

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Hi Darryl. This is good news. I have heard of ketamine infusions and how some people get relief. I looked into ketamine once but like you say, it's not covered by insurance. I think your best bet is to contact the office that is scheduling you and ask them how much it is out of pocket. I'm sure prices vary.

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Hello I’m Susan. I have fibromyalgia, osteoarthritis, occipital neuralgia, and peripheral neuropathy.
Unfortunately, my body is extremely sensitive to drugs like Lyrica, gabapentin, and even Tylenol. I take a blood thinner because I have A-fib so I can’t take ibuprofen.
For me topical creams like Aspercreme, magnesium lotion or oil work well. A heating pad, and ice also help.
The occipital neuralgia is new for me, and I find it to be a huge challenge. The pain on my head and around my face is horrible at times.
I’m blessed to receive grace from my Lord Jesus Christ. He keeps me focused on what is really important.

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@SusanEllen66

Hello I’m Susan. I have fibromyalgia, osteoarthritis, occipital neuralgia, and peripheral neuropathy.
Unfortunately, my body is extremely sensitive to drugs like Lyrica, gabapentin, and even Tylenol. I take a blood thinner because I have A-fib so I can’t take ibuprofen.
For me topical creams like Aspercreme, magnesium lotion or oil work well. A heating pad, and ice also help.
The occipital neuralgia is new for me, and I find it to be a huge challenge. The pain on my head and around my face is horrible at times.
I’m blessed to receive grace from my Lord Jesus Christ. He keeps me focused on what is really important.

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Good morning, Susan - have you tried meditation and deep breathing during your occipital neuralgia flares?

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@drg24242

I did try a spinal cord stimulator trial made by Abboit,sp?, in mid November but it did not work. Of course the doctor, whom is supposed to be the best around here, want's me to come and try another manufacturer, but my attitude is that if he felt another manufacturer would help , he would of used it the first time. Just trying to make money!
I also heard from a close friend of my sisters today, That she see's the same doctor I am supposed to see on 1/9/23 that she see's him for knee pain and doubt's if he will know anything about CRPS. Another road block but I'll keep the appointment unles I can find anyone else.
I know that I should be going to a Mayo facility but my financesses will not permit. Thank's for listening. Darryl

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My pain management doctor said Abbott is his last choice of who to use. Boston Scientific was his first choice. I had one. Please ask them about their representatives. I had constant turnover and eventually had it removed.

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@rwinney

Good morning, Susan - have you tried meditation and deep breathing during your occipital neuralgia flares?

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No I haven’t. I’m putting a heating pad on the back of my neck and I find that really helps.

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Hi I'm Victoria. I had GERD and ended up having a Toupett Fundoplication. Had severe upper abdominal chest pains beginning 1st week.
Had complete heart work up. The surgeon said nothing he had done and would noot reverse
I went for many test, mri's cat scans and x-rays bc I was in so much pain Nothing.
I found another surgeon that was willing to do the reversal and repair a hernia on by belly button 9 months later.
I had the reversal done and surgeon said looked properly done.
Chest pain in upper abdominal region never went away. I can only get up for 15-25 minutes and I feel like I'm having a heart attack. Labored breathing, break out in a sweat and the pain is so severe I'm bent over until I can sit or lay down
I always have pain..movement makes it worse.
I've had every GI test imaginable, egd's, scans ..at the University of Tampa GI
Can't find anything.
Oh, and I got gastroparesis and had a G-Poem also. This all has been going on for 3 years this coming February.
I just got a referral from one of my surgeon's for Mayo Clinic, Jacksonville.
Has anyone ever expected anything like this from a Fundoplication?
Please let me know.
Thank you,
Victoria

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@drg24242

Hi Rachel and everyone. My CRPS is continuing to progress. It started on left upper body and in last week continued now to right upper body and in last 48 hours into my left toe.
I saw on this sight a treatment called Ketamine Pain Treatments. I've followed up and found that the head doctor at UPMC Pittsburgh, Pa. pain manag ,Where I live, does these and called his office this morning. His nurse told me that he was booked until late January. I explained my situation. I recieved a call back an hour later that they had a cancellation. on 1/9/23. I jumped at it. I understand that the Ketamine treatment is not covered buy any insurance.
Any idea how much each treatment will cost me? Depending on haw much I may have to do a reverse mortgage on my home.Pleae respond from anyone as how much this will cost me. Please advise. Thank's Darryl

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Hi Darryl,
YMMV, but it seems to run about 2K per infusion under medical supervision in my experience.

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Has anyone had experience treating pelvic floor pain w/ botox?

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@vlvhvlvh

Hi I'm Victoria. I had GERD and ended up having a Toupett Fundoplication. Had severe upper abdominal chest pains beginning 1st week.
Had complete heart work up. The surgeon said nothing he had done and would noot reverse
I went for many test, mri's cat scans and x-rays bc I was in so much pain Nothing.
I found another surgeon that was willing to do the reversal and repair a hernia on by belly button 9 months later.
I had the reversal done and surgeon said looked properly done.
Chest pain in upper abdominal region never went away. I can only get up for 15-25 minutes and I feel like I'm having a heart attack. Labored breathing, break out in a sweat and the pain is so severe I'm bent over until I can sit or lay down
I always have pain..movement makes it worse.
I've had every GI test imaginable, egd's, scans ..at the University of Tampa GI
Can't find anything.
Oh, and I got gastroparesis and had a G-Poem also. This all has been going on for 3 years this coming February.
I just got a referral from one of my surgeon's for Mayo Clinic, Jacksonville.
Has anyone ever expected anything like this from a Fundoplication?
Please let me know.
Thank you,
Victoria

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Hi Victoria, you may be interested in connecting with other members in these 2 related discussions:
- Surgery for GERD https://connect.mayoclinic.org/discussion/toupet-fundoplication/
- Toupet Fundoplication post op problem https://connect.mayoclinic.org/discussion/toupet-fundoplication-post-op-problem/

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@SusanEllen66

No I haven’t. I’m putting a heating pad on the back of my neck and I find that really helps.

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Hi Susan, I'm glad you feel relief with heat. Considering your Occipital Neuralgia diagnosis is new and has been challenging, allow me to introduce you to @lakesofdelray who also is challenged with ON and has recently expressed that it brings on anxiety.

You will find other members in this discussion about ON that you may connect with:

Occipital Neuralgia -
https://connect.mayoclinic.org/discussion/occipital-neuralgia/
You mention finding grace through faith. What a wonderful way to keep positive focus while dealing with chronic pain. I like to use guided imagery and meditation to help focus. I find that writing my daily gratitude journal helps too. Do you journal?

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